School begins, and the guy at the pizza place

It’s been a busy couple of weeks, getting back into the school routine: earlier bedtimes, packing lunches, scrambling to get out the door, dabbling in some homework.

Hope is slowly recovering from the steroids. I’m making the transition from happily supplying whatever food she agrees to eat (from $6/bag pretzel chips – I can’t imagine our pretzel spending in the last month – to a daily McDonald’s run for “chicken and fries”) to insisting upon some healthier options interspersed between the salty snack food that has become the backbone of her diet. And I’ve put my foot down about the McDonald’s. Celia’s observation from earlier in the summer is haunting me: “Isn’t it weird that we never used to eat McDonald’s food because it isn’t healthy, and then one of us got cancer and we go here all the time?” Uh, yes, it’s weird.

It’s also weird that I’ve gone from being a person who refused to buy paper towels, opting for piles of kitchen rags and washcloths, and who insisted upon hand-washing plastic containers rather than putting plastics in the hot dishwasher, to being a person who is all about disposable everything and sanitizing everything in the dishwasher. The landfill and unseen carcinogens be damned. Yes, weird.

All that aside, despite an apparently insignificant rash, Hope is shedding the steroid side effects – though she is trying hard to cling to the snack food and challenging mood. (We are getting a lot of “NO, RIGHT NOW!”) But her counts are still too low to move on to the next round of chemo. We tried on Friday and will return on Wednesday for another go at it.

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Taking Hope out in public is strange. In some ways, we are used to being noticed. She is crazy cute, of course ; ) Additionally, children with Down syndrome seem to elicit double-takes with some regularity. It’s fine. It doesn’t bother me anymore. In fact, I have developed the probably annoying tendency to take any brave sustained second look as an invitation to introduce Hope and engage the innocent bystander as long as they are willing.

But since she’s lost her hair, it’s different. You don’t see many kids with cancer out and about. There’s a sadness that goes along with the second look; and eyes are generally diverted as quickly as possible. It’s understandable. No one wants to pry. No one wants to ask a question that has an answer they don’t want to hear; it just might make a casual encounter monumentally uncomfortable. What if the news isn’t good? What if she’s terminal? What if it’s inoperable? What if… I sympathize because I have felt the same barrier in clinic and on the inpatient side. But the consequence of this completely reasonable situation is the feeling that you suck the air out of every room you enter. Maybe it’s another reason that being in the hospital starts to feel so comforting.

Today, however, we had a different experience. A stranger came up to us in a pizza place. We were picking up Hope’s craving of the week, her fourth cheese pizza in as many days. (She pretty much only eats the crust.) As the man ahead of us in line paid and turned to leave with his stack of pizzas, he did the requisite double-take, then turned to me and asked, “How is she doing?” I looked at him closely, assuming at first that he must be someone I knew. I guess I looked flustered because he then explained that his son had gone through chemo treatments for retinoblastoma when he was 7 months old – he is five now and doing great. The air rushed into the room and I gave him a few brief bullet points – diagnosis, one month left of intense chemo, doing pretty well – and he left.

I instantly thought of an interaction on another recent pizza run. Hope and I had run into an acquaintance. It was probably the first time he had seen Hope since her diagnosis, and when he approached us, his face took on a strange contorted look of concern. He said he was “so sorry to hear about what you're dealing with.” And then without missing a beat: “But besides that, how’s everything going?”

“Besides that”? So, maybe I was having a bad day, a little raw or hyper-sensitive, but “besides that”?!?

There is no “besides that” – there is just “that.” How we are managing work around cancer, how the kids are trying to have their childhoods around cancer, how we are desperately hunting for small windows of family fun and connection around cancer.

My mom often quotes her Nanna as saying, “Every baby brings their own love.” There isn’t a finite amount of love to be distributed amongst people; love is born in relationship. I would add that each human also brings joy and wonder and pain and loss in somewhat equal measure into the world. You don’t get to share in the joy without taking on some of the pain, that’s what it means to be in relationship.

The stranger in the pizza place took a tremendous risk – and because he has been where we are, he did so knowingly. He invited both the joy and the pain – hoping I would say she was doing great, but knowing I might say it was relapse, that I might share that her prognosis was poor, that I might dissolve into a puddle while he stood there holding his pizza. He knew it, and he did it anyway. And with that simple question, he took on a piece of our burden. Hope’s cancer was, for that moment, not the bald elephant in the room – the thing that cannot be overlooked, but is so frightening that it cannot be acknowledged – it was instead the pain and sorrow inextricably intertwined with the joy and wonder.